One day at a time...

My husband and I were blessed with a beautiful baby boy in August 2009. Soon after he was born I saw him make weird movements when I changed his diaper. Everyone around me thought it was probably normal infant jerks. Being a first time mom, I thought maybe I was being paranoid, but I still called the pediatrician. After being admitted to the hospital, our fears were confirmed...Landon was having seizures. He was started on Trileptal and after a few days sent home. Things didn't seem to progress so we had to return to the hospital and he was put on phenobarbital. After a few weeks of no progess he was taken off the phenobarb and Keppra was added. We continued to see our neurologist each month for the next few months. In December 2009 his seizures changed. He began violent jerks. His body would bend at the center, his arms would fly outward, his legs would pull to his chest, and he would stare. This was a big change from his shaking legs in the beginning. The doctors began adding new medicines including: Keppra, B6, Coenzymated B6, and Lucovorin. I took videos to our appointments, but they never seemed concerned. That is until I showed my pediatrician the video at Landon's 6 month checkup. He was extremely concerned, and had us admitted to the hospital again. He believed Landon could be having Infantile Spasms. After our 4th EEG,he was diagnosed with having Myoclonic Seizures. They have now added Topomax, and Klonopin to his list off many daily medications. They are looking for a cause, but have not been successful yet. Our neurologists are concerned with his development and feel he may be regressing. We are optomistic we will get his seizures under control and continue to progress with his milestones, but sometimes it takes alot to not lose it. We will soon be heading on a 6 hour trip to Philadelphia in hopes that the doctors at Children's will be able to help him. We hope to find other people who can relate, and help us or that we may be able to possibly help your difficult journey. I will add more information about Landon including pictures and videos of his seizures, but this is a quick overview of our little angel.